For many people with #RareDiseases, care coordination isn’t provided - it’s expected. 📊 65% navigate multiple services 67% say providers communicate poorly 7 in 10 spend significant time organising care Integrated care is essential. 👉 Read more: https://go.eurordis.org/integratedcare

Step forward and lead the conversation at #ECRD2026! Participants can now submit topics for interactive group discussions in Prague. 📅 3 June 📩 Submit by 17 April: https://go.eurordis.org/groupECRD2026

🚀 Do you want to help shape patient-centred ATMP clinical trials? Join4ATMP is launching a new webinar series on patient involvement in trial design. Join the discussions now! 📅 14 April 2026 - 17:00–19:00 CET 👉 https://go.eurordis.org/Jointhewebinar

At #DIAEurope2026, EURORDIS highlighted a clear message: Europe’s innovation must be built with patients as partners - from data governance to fostering a culture of collaboration and using tools like regulatory sandboxes. 👉 Learn more: https://go.eurordis.org/eurordisareas

Last Friday, Adéla Odrihocká represented EURORDIS at the Youth Policy Dialogue with Commissioner Hadja Lahbib, raising key issues for people living with rare diseases, including employment, disability recognition & accessibility. 🔗 Read more: https://go.eurordis.org/MidReview

#ECRD2026 is approaching! 👥 On 3–4 June, the rare disease community will gather in Prague & online to connect, collaborate and shape the future of rare disease policy in Europe. 👉 Register and join the conversation: https://go.eurordis.org/register-bsky

At #ECRD2026, three parallel tracks on 4 June, each exploring key challenges in rare disease care: 🏥 Specialised Healthcare 💊 Preparing Reimbursement Decisions 🧠 Mental Health Explore the sessions shaping these discussions: https://go.eurordis.org/register-bsky

Data and digital health are transforming #rarediseasecare.🧬 From Electronic Health Records to safe telemedicine and better data sharing, EURORDIS is working to improve diagnosis, research and access to care across Europe. 👉 Learn more about our work: https://go.eurordis.org/DigitalHealth

🧬 It takes on average 5 years to diagnose a #raredisease. 70% of patients wait more than a year after first seeking medical attention. #Diagnosis should not depend on where you live. Earlier, equitable access to diagnosis must be the standard. 🔗https://go.eurordis.org/rare-disease-diagnosis

At #ECRD2026, three parallel tracks on 3 June will explore key rare disease challenges: 🔬 Therapies & medical devices 🧬 Diagnosis, research & prevention ❤️ Evidence-based holistic care Discover the sessions shaping these discussions: https://go.eurordis.org/ecrd-postersbluesky

To mark #RareDiseaseDay 2026, the short film of our global #RaisingYouthVoices2026 event was released! 🎥 Learn more about the issues that are driving young members of our community to fight for a more equitable future.⬇️

✨ Relive the 15th #BlackPearlAwards through the moments that shaped the evening! From inspiring speeches to celebrating this year’s awardees, the night honoured leadership and innovation in the rare disease community. 📸 Explore the photo gallery: https://go.eurordis.org/BPA

🚀 Today marked the kick-off of the European Regional Task Force on Rare Diseases! This group will help shape a European Blueprint & contribute to the Global Action Plan. Learn more 👉 https://go.eurordis.org/regional-task-force

We welcome the draft report presented by MEP Nicolás González Casares calling on the European Commission to propose legislation establishing a European Rare Disease Action Framework. 🇪🇺 #ActRare 👉 Read our full statement: https://go.eurordis.org/ppXcoG

We welcome the draft report presented by MEP Nicolás González Casares calling on the European Commission to propose legislation establishing a European Rare Disease Action Framework. 🇪🇺 #ActRare 👉 Read our full statement: https://go.eurordis.org/ppXcoG

Five years after the Rare2030 recommendations and one year after the WHA called for a Global Action Plan, rare disease policy is both a moral imperative and a strategic investment. Be part of this momentum. 👉 https://go.eurordis.org/register-bsky

France has today sent a non-paper to @ec.europa.eu calling for the reintroduction of operating grants under EU4Health from 2026. 🇪🇺 We, together with fellow members of the #EU4Health Civil Society Alliance, reiterate our call them to be reinstated. Read the full statement 👉 go.eurordis.org/SVbzsn

For Kostiantyn, #RareDiseaseDay’s message More Than You Can Imagine means more access. Living with a rare disease in Ukraine meant navigating not only his condition, but barriers to treatment and support. 🎥 Watch his story!

📢 New Webinar on how can patient groups help safeguard access to essential treatments? Join us 4 March, 15:00–16:30 CET (online) to learn how to engage in consultations & ensure critical medicines remain available for people living with a rare disease.🔗https://go.eurordis.org/register-now

As #RareDiseaseDay approaches, Shum, a young advocate shares what More Than You Can Imagine means to him: Harmony. 🎶 Living with a rare disease, he sees the community like music - every person is a voice. And only together can we create true harmony. 🎥 Watch his story

Today we held the 41st Workshop of the EURORDIS Round Table of companies (ERTC). 🤝 Thank you to all our speakers and participants for contributing to a thoughtful and forward-looking exchange! @ec.europa.eu @ema.europa.eu 👉 Learn more about today's discussions: go.eurordis.org/ERTC41

✨ That’s a wrap on the 15th #EURPRDISAWARDS2026! Tonight in Brussels and online, we celebrated leaders driving change in the rare disease community. Congrats to all our awardees! 🎥 https://go.eurordis.org/BPA2026

⚫ Today is the day! The 15th #BlackPearlAwards take place tonight, celebrating leadership and impact in the rare disease community! Tune in live at 8pm to show your support for the people working to build a better future for the rare disease community.🎥 https://go.eurordis.org/register

At #ECRD2026, the Mental Health track will address the often overlooked psychological & social challenges of rare conditions, highlighting gaps in care, research & policy - and the need for integrated, patient-centred approaches across Europe. 👉 https://go.eurordis.org/register-in

At #ECRD2026, the Preparing Reimbursement Decisions track will explore how Europe can prepare for the inclusion of orphan medicines in the EU #HTAR framework, building on lessons from oncology and ATMPs to support fairer access to treatments. 👉 https://go.eurordis.org/register-in

#Europe is entering a new chapter in rare disease policy. Through the #EuropeanRegionalTaskForce, we aim to ensure the rare disease community has a clear and striking voice in shaping the European Blueprint for Rare Diseases. ⏳ Apply by 26 Feb: https://go.eurordis.org/regional-task-force

⏳Deadline is approaching - Poster Abstract submissions close on 6 March! Submit your poster abstract for review by the #ECRD Poster Committee. Accepted posters will feature in the virtual showcase, with onsite display for registered representing authors.👉 https://go.eurordis.org/posters-ecrd-bluesky

📢 Reminder: Expressions of Interest close 26 February! #EURORDIS is launching a European Regional Task Force to help shape a European Blueprint for Rare Diseases and inform policy discussions ahead of #ECRD2026. Learn more & apply: https://go.eurordis.org/regional-task-force

Attending #ECRD2026 on 3–4 June? 👀 Live captioning and AI-powered translation will be available throughout the event, with real-time access in 60+ languages. Learn more & register: https://go.eurordis.org/register-in

On 28 Feb 2026, #RareDiseaseDay unites communities worldwide. More than awareness, it’s a movement for equity, inclusion & collective action for people living with a rare disease. 👉 Read the article & see how to get involved: https://go.eurordis.org/rdd-2026

This year’s #BlackPearlAwards welcomes Felix Klieser🎺 Born without arms, he began playing French horn at 5 and became an internationally acclaimed soloist. His artistry is powerful, and truly distinctive. We can’t wait to share this moment with you: https://go.eurordis.org/black-pearl-reg

At #ECRD2026, the Specialised Healthcare track will explore how health systems can ensure timely, equitable access to expert care for rare & complex conditions, drawing on #Rare2030 recommendations to inform stronger policies across Europe. 👉 https://go.eurordis.org/register-in

Our 6 FINALISTS are here… but who will win? 👀 🗳️ Voting for the #EURORDIS Photo Award 2026 is officially OPEN! 🔗 Vote now & help us crown the winners on 24 Feb 2026: https://www.eurordis.org/black-pearl-awards/photo-award/EURORDIS#EURORDIS

In collaboration with the members of our Social Policy Action Group (SPAG), we have responded to the midterm review of the European Strategy for the Rights of Persons with Disabilities to help ensure the inclusion of all voices in the review. Full response 👇 https://go.eurordis.org/tvRhTw

💊 Access to rare disease treatments remains unequal across #Europe. At EURORDIS, we advocate for therapies that are accessible, affordable & available for all patients, and for a stronger EU pathway from development to access. 📖 Learn more: https://go.eurordis.org/treatments#Europe

⏰ Poster Abstract submissions for #ECRD2026 close on 6 March! All accepted posters will be featured in the virtual exhibition and top-scoring posters will be selected for a live Poster Pitch Session. 👉 https://go.eurordis.org/ecrd-postersbluesky

We are proud to present the 2026 EURORDIS Company Award for Patient Engagement to Roche, in partnership with King’s College London, for their commitment to involving patients as equal partners in the AIMS-2-TRIALS consortium. #EURORDISAwards2026 🤝 Learn more: https://go.eurordis.org/Awardees

At #ECRD2026, the Evidence-based Holistic Care track will explore integrated clinical, psychological & social support, patient involvement in research, and how evidence can better shape policies across Europe. 👉 https://go.eurordis.org/Awardees

#EURORDIS is launching a European Regional Task Force to assist our development of a new European Blueprint for Rare Diseases. Expressions of interest are open to patient organisations, alliances & stakeholders. 📖Are you interested in joining? Learn more! https://www.eurordis.org/

Wrapping up #RaisingYouthVoices in Barcelona!✨ Today brought together youth advocates and Regional representatives from around the world to share perspectives, exchange ideas & highlight priorities shaping the rare disease community’s future. 🎥 Replay: https://go.rarediseaseday.org/livestream#RaisingYouthVoices

#WorldCancerDay 🎗️ reminds us that rare cancers must not be overlooked. Patients face delayed diagnosis, limited expertise, and unequal access to care. Our Rare Cancer Advocates Network works to raise visibility and drive progress. 🔎: https://go.eurordis.org/rare-cancers

We are pleased to present the EURORDIS Company Award for Health Technology to Saventic Health, recognising its pioneering use of artificial intelligence to support timely and accurate diagnosis for people living with rare diseases. #EURORDISAwards2026 💡 Learn more: https://go.eurordis.org/Awardees

📢 New publication by Matt Bolz-Johnson, based on work during his time at EURORDIS: Evidence evaluation in rare disease guidelines: a methodological perspective. The paper looks at how GRADE can be adapted for rare diseases using real-world data & expert input. 🔗 https://go.eurordis.org/article

#Diagnostic delays remain a major challenge for people living with a rare disease. At #ECRD2026, the Diagnosis, Research & Prevention track will explore early detection, newborn screening, and the journey from diagnosis to treatment. 👉 https://go.eurordis.org/register-in

The EURORDIS Leadership Award recognises exceptional leadership and unwavering commitment to improving the lives of people living with rare diseases. This year, we are pleased to present this award to Ágnes Cser. 👏 Read more about her work @‌EU_EESC 👇 https://go.eurordis.org/Awardees

Poster presentations are where practical insights & lessons learned are shared - what is working, what is missing, and what must change! #ECRD2026 👉 https://go.eurordis.org/ecrd-postersbluesky#ECRD2026 Accepted posters will feature in the virtual exhibition + representing authors get 20% off registration.

We are honoured to present the 2026 EURORDIS Policy Maker Award to Jakub Dvořáček, in acknowledgement of his exceptional leadership and unwavering commitment to advancing rare disease policy across Europe, and beyond. 👉 https://go.eurordis.org/Awardees

#ECRD2026 is less than 6 months away! On 3–4 June (Prague + online), stakeholders will advance concrete policy solutions for people living with a rare disease. Key highlight: a #EuropeanBlueprint for Rare Diseases. Learn more: https://go.eurordis.org/ECRD2026

Last chance to apply to the #OpenAcademy training on Data Governance, Ethics & #AI! 📊 For 20 rare disease advocates worldwide. Learn more & apply: https://go.eurordis.org/open-academy-training#OpenAcademy⏳ Deadline: 2 Feb!

📸 One week left to enter the EURORDIS Photo Award! Share what living with a rare disease means to you and help make the rare disease experience visible worldwide. 🔗 Submit here: https://go.eurordis.org/photoaward